Felicity didn’t realise she was a carer for a number of years until a crisis hit.

Felicity didn’t realise she was a carer for a number of years until a crisis hit. But when it did, the penny dropped. She had, in fact, been the primary support person for her husband for years and without her, it became clear that he could not function independently.

Felicity’s husband, Gerald, was a bank officer when they first met ten years ago. He was dashingly handsome, smart and financially savvy.

“Gerald always had his finger on the pulse and knew exactly what was happening in business and the financial markets,” Felicity said. “His friends and family always went to him for financial advice. He was great at maths and figures and helped the whole family with their tax.

“He was very involved in motor sports and was a competitive racing driver for much of his life, so you would say he was an extremely competent and skilled driver.”

Felicity first noticed that something was not right when Gerald went around a roundabout the wrong way one day. “He was horrified with himself and just put it down to being tired and distracted. We thought no more about it.

“I didn’t really understand just how bad his driving had become as I had my own car and I usually did the driving when we travelled together, as he was always on the phone with clients or business associates.

“But about a year after the roundabout incident, I was driving home with him and he got lost in a familiar part of our local neighbourhood. He was quite disoriented and didn’t know where he was. It was distressing for us both. Then there were all the unexplained dents and scratches all over the car – each time he went out, he came back with another ding but had no idea how it had happened.

“I suggested he go to see a specialist but being a man, he just brushed it off and again made an excuse about being tired and having low blood pressure which was making him dizzy.

“He retired from work and I later learned that he had been pushed to go, as he was making a lot of basic mistakes and there had been a number of complaints about him by other staff and customers.

“By then I was noticing odd behaviours at home like, we would have lunch and then 10 minutes later he would ask what we were going to have for lunch. Or he would go and make a cup of coffee and mistakenly pour the water into the toaster instead of the coffee machine water tank.

Felicity took over all the banking, finance and house upkeep

“I started doing a lot more for him and took over all of our banking, tax and finance, including managing our investment properties and share portfolio. He was basically incapable of even operating an ATM and lost the ability to add up figures or even use a calculator.

“One day he told me he ‘did the lawns’ and it was sad and amusing, as he had taken the ride-on down the street and mown the local park, while our own lawn was ankle high. So I started doing the lawns and the brush cutting and the shopping, cooking and cleaning as well as holding down a full-time job as a legal secretary.

“He was embarrassed about going out initially, but then he just became reclusive and hostile. He was aggressive and rude towards me and would shout and act threateningly which was completely out of character for him, as he had always been such a kind and gentle man.

“It took a long time to get a diagnosis of dementia, and it was just devastating when we got it, but it made sense of all of his behaviours and loss of function.”

Felicity said that initially her husband’s condition did not impact on her working life, but over time, she had to decrease her hours significantly as his care needs increased. He would wander and get lost so neighbours or the police would frequently call her at work to collect him. He would forget to eat, even when food was made and left out for him. He forgot how to shower and follow basic hygiene. He made mistakes about the location of the toilet.

But still, she didn’t think of herself as a ‘carer’. She claimed no benefits and had no outside help whatsoever. Gerald’s grown children all lived overseas and were not at all interested in helping her to support their father.

After the fire, Felicity realised she was a carer

One day Felicity had a call from the hospital. Gerald had burned himself badly in a kitchen fire. Part of the house had burned down. The fire brigade had managed to save most of the house, but much of it was a charred sodden mess.

“That was when I fully realised that Gerald needed a carer and that in fact I had been his carer for many years without realising it had happened. It just snuck up on me,” Felicity said.

“I went through a terrible few months at work, trying to get enough time off to deal with Gerald’s injuries, insurance claims, rebuilding the house and finding out what community and government resources I could tap into. I had no support network and no idea where to start. It was a nightmare. I was so unprepared.

“In the end, it was less stressful to leave my job and care for Gerald at home than it was to be at work, constantly juggling my work and caring responsibilities and worried sick about what might happen to him.

“I worked in a busy legal practice and although my employer was sympathetic, at the end of the day, they needed someone to do the work and could not carry me any longer.

“Now I take art classes one day a week and volunteer at Lifeline one day a week to get a break from my caring duties. I have someone come into the home to care for Gerald when I am gone.

“We still have days that are okay together, with laughter and tenderness, but pretty much my whole life has changed.

“They say that even if the brain does not remember the heart always will, and I can only hope that Gerald will continue to realise who I am and that I still care for him and love him very much. But it is so very hard to come to terms with his disease.

“I have gone from being a wife, lover, friend and business partner to this very energetic, wonderful, funny, witty and loving man, to almost being the mother of an intellectually disabled adult. I have lost the man of my dreams. It is very sad.

“In that process I have lost myself as an individual, too. Slowly but surely my whole life has changed. And I don’t really like where it has taken me.”

Funded by...

The Working Carers Gateway is funded by Family & Community Services NSW